Working in partnership with heart failure patients and carers to improve end of life conversations and palliative care provision with clinicians

Background

Heart failure is the end stage condition of most diseases associated with the heart, and is a long term condition that has a progressive nature, which is associated with a high risk of sudden or premature death. For some patients their final months (or years) of life can be distressing due to poorly controlled symptoms . These symptoms (such as fatigue, pain, breathlessness and anxiety) are commonly associated with those of cancer.
Despite this current literature illustrates a disproportionate difference and inequalities in accessing palliative care between cancer and heart failure patients with this aspect of care still being interpreted as mainly being available to cancer patients.
Clinical experience of the principal investigator reflected these findings, and due to the terminal nature of heart failure, and the prevalence of the disease, the evidence demonstrates a clear need for heart failure patients to receive palliative care, in a much more systematic way (which addresses unwarranted variation in treatment). Available evidence suggests that this requirement is currently not being met. As such, there is a clear necessity for more information on how these unmet needs can be identified and implemented into clinical practice.

The research question for this study is:
What are heart failure patients’ and carers’ experiences and expectations of end of life conversations and palliative care provision? And how can this be implemented in clinical practice?

Project Aims

The aim of this study is to improve end of life conversations and palliative care provision, by working in partnership with heart failure nurses, patients and carers from the beginning of the research process. Through a course of data collection, areas of clinical practice improvement will be identified, that will inform clinical practice through dissemination of findings to those healthcare professionals responsible for this aspect of care provision.

Project Activity

• Current literature reiterates the primary investigator's clinical experiences in palliative care provision for this under-represented group
• A national heart failure charity has agreed to work collaboratively with the primary investigator on this research.
• Focus group discussions between the heart failure charity and primary investigator have discussed the purpose of the study and the research methods to ensure they are appropriate.
• The research participation information sheets and interview questions have been co-produced between the heart failure charity and primary investigator to ensure the wording is appropriate for this patient / carer group when discussing this sensitive topic.
• University of Essex ethical approval has been granted, for recruitment through the heart failure charity's online platform.
• Amendment for the University of Essex ethical approval has been granted for other appropriate charitable organisations to assist with recruitment. With other national palliative care charities agreeing to assist with the promotion of this study.
• Due to slow recruitment, NHS ethics application is currently under REC review. Once this has been passed, the supporting NHS trust who have agreed to support this research will assist in recruitment of participants.

Anticipated Impact

Once this research data has been collected and analysed by the primary investigator, these anonymised findings / themes will be presented and discussed with the co-production heart failure charity to ensure they are from a service users perspective.
A group of heart failure nurses will then be recruited to discuss how these findings can be implemented into clinical practice.

Contact

Principal Investigator: Amanda Farwell, PhD student, University of Essex